Monday, July 28, 2008

I was reading a post on CWD for parents about "who were you before D?" It's interesting. For me, it's hard to answer. Before diabetes, or before diagnosis?

The years just before diagnosis for me were a haze of chronic fatigue, repeated illnesses, slogging through college classes when I couldn't concentrate, because otherwise I'd lose my health insurance. I was lucky to have an excellent GP, a professor of medicine who took me seriously and wanted to get to the bottom of it. With every new diagnosis, a new piece of the puzzle fell into place, but still something was missing. I say this a lot, but diabetes was just the last diagnosis. Once I had that, the last big mystery was solved, and I dropped out of school because I didn't need their higher level of coverage anymore. (My GP had already left for greener pastures).

So before diagnosis, I had been barely treading water for quite awhile. I'd always had most of these things and just learned to live with them, but I started to get really sick when I started my Master's degree in 2002. I wasn't diagnosed with diabetes until 2005, when I was 27. People seem to define themselves in terms of their careers, or their aspirations. My aspirations were things like getting through the next day, or even the next hour, and my career motivation was what I jokingly referred to as, "get to work or you're fired."

I don't define myself by my career. There was a time when I really wanted to be a librarian (surprisingly while working in a library), so I went to library school. By the time I got there, though, it just didn't seem as important. I arrived at a much less accessible campus than where I did my undergrad, and discovered for the first time in my life that I'm disabled. I know, I know. It had just never occurred to me before. As they say, life got in the way, and I fell behind in my career because I wasn't up to a full time job. I spent several of the last few years unemployed, because I can't do physically demanding jobs anymore (or fake it well enough), and people are pretty puzzled by my resume since I didn't take the usual career path. I would still love to go back to school and seriously take all those classes, but I don't have the stamina.

On the other hand, I am lucky now to be in a better situation so that I can sit at my computer all day without it being excessively painful. I'm in much better health now. On the other hand, I'm not young anymore. I hear some groaning out there, but it's true. I've always loved to learn and to research. So now I spend my time researching diabetes. I got so frustrated when I was first diagnosed and couldn't find any information that made sense. I even went to the medical library and checked out all the textbooks, but they didn't make sense, either. Now, I get it. They didn't make sense because people just didn't know any better. Of course sliding scale regimens are great! Of course Lantus is scary and untested and not safe for pregnancy or small children! If you're laughing, consider that many people believe it because the long term studies haven't been done yet on these new things, so they couldn't possibly recommend them to patients. Seriously. Hands up, how many people want to go back to R and NPH? Anyone want to convince an angry toddler that they have to eat more carbs to feed the NPH?

Before diabetes, I was just someone who liked to learn, and somehow now I've become someone who likes to learn about diabetes. Someone sarcastically asked me recently, "what, do you just research diabetes all the time?" I laughed, because...I do. I've learned the hard way that the other things I used to do were too stressful, or I didn't really enjoy them, whereas now I have something to do that's interesting and important. I will stop when doctors stop telling people they have "borderline diabetes," to lose some weight and see them in three months. I will stop when people understand one kind of diabetes, maybe even two! I will stop when people know that there is still no cure for Type 1. I will stop when large organizations stop telling people they need to eat more starches to treat Type 2. So, yes, I spend all my free time learning about diabetes and annoying people on the internet. There you have it.

Monday, July 14, 2008

I guess I don't have much to say lately. My endo appointment went well. Well, the actual appointment - the day wasn't so great. It's July and I got a call from my grandmother a couple weeks ago. She wanted me to fly out and surprise my mother who was visiting her the next week. The problem with that (besides the timing) being that I haven't spoken to my mother since July of 2005.

They say she's doing better now, after going to rehab (again) six months ago. She's been trying to contact me pretty much the whole time, but six months ago the 3 am phone calls stopped and more reasonable attempts were made. Still, I don't think people change that much in even six months. I don't know if I'm up for the journey, either. I put a lot of time and effort into helping her before because she managed to keep me alive for 18 years (you can't hear me, but that's kind of a joke because really it was more in spite of her), but it was all for nothing. My family are all mad at me because they seem to think it's my job to keep "helping" someone who refuses to fundamentally change. They think I'm bitter and unfair and it couldn't possibly have been as bad as I say. They don't even know the half of it, actually. I'm not even bitter about it, just pragmatic.

Do I really want someone back in my life who is going to constantly nag me in a completely unhelpful manner? Who judges my life choices and always criticises no matter how I succeed? Someone who's only seen me once in the past ten years and never saw me eat for ten years before that, but thinks it's perfectly acceptable to repeatedly tell me I got Type 1 diabetes because I "eat a lot of junk food?" (For the record, I don't, and never really have). Someone who can't stop herself from commenting on my personal life (or what she thinks it is, which is totally off base) in public, often, and loudly? I mean, intellectually I know that what she says has nothing to do with me or my reality. It's all about her, her insecurities, and her fears. She actually knows what causes Type 1 diabetes, but she can't mentally allow me to be who I am because she feels like it's somehow a judgment of her. Knowing that doesn't make it any easier to actually be around her, though.

Still, there is a family event coming up where I know we would have to be there, and I'm already having trouble picturing her constant nutso criticism and me not just getting up and leaving. With the diabetes, I have kind of a short fuse when someone does it in person, while I'm doing stuff. I am totally willing to talk about diabetes, but not while I'm actually doing it and need to think about what I'm doing. My mother is like the Everything Police. Then, the usual techniques don't work, either and tend to exacerbate things. If you try to shame her about what she's saying (in a Miss Manners style), she just gets more agitated and insistent. Family situations are also a huge trigger for her, and I find them difficult to deal with as well, because I kind of feel like people are trying to force me into a role I never even had. Coming up on three years now, and this is what's on my mind.